Hi all,
This is my first time joining this group, stumbled across it in a desperate attempt to find some help.
I am a 31 year old whos mam was recently diagnosed with Acute myeloid leukaemia (AML) on the 5th December (just over 2 weeks ago) after going to A&E with abdominal pain. (Her spleen was pressing against her stomach). She was other wise fit and well prior to the sudden onset of abdominal pain. So all of this was a massive shock.
She is 3 days post induction therapy and today has been extremely rough for her. She has possibly picked up an infection CRP level shot up through the night and is spiking temps.
The consultants, doctors and nurses are amazing and are doing everything medically they can. I can not fault them at all.! However, my mams nutrition has took a massive blow as has her fluid intake. Im not pressuring just try to encourage her to try. The issue im having is that although she is trying so hard, even accepting the fortisip. She couldnt stomach it and made its return rather aggressively.
The first thing she said to me when diagnosed was “please dont let me stop eating, under no circumstances do I want a tube”. Second thing she said to me was “dont ever let me give up, no matter how rough”. My mom is very self aware. And this is the frist time she has every stopped in hospital for herself in her 53 years of life. She has never been a sickly person and has never really unwell.
So as you can imagine she isnt taking to well to being this poorly.
I was wondering if anyone can give me some advice on what I can do to try and help fulfill her wishes. Today has been particularly hard, as I understand how she must be feeling and struggling. But I never want yo go back on my word. I am here for her every step of the way for what ever it is she needs me for. Im just not sure what it is I am able to do to help.
Any tips and advice would be much appreciated. On what helped for any of you and how I can keep that firey spirit in her eyes alight.
Thank you for any advice in advance.
Im just a little lost right now.
I am so glad you found us and felt able to share all that is going on for you. I am so sorry you and your family are going through this.
Firstly I just wanted to say if you want to talk in a bit more detail you are welcome to call us on 0808 2080 888. Our phoneline opens at 10am and we would be very happy to talk and support you.
Keeping up nutrition can be a real challenge when going through this sort of treatment, when you feel poorly/being pumped full of new medicines you really don’t fancy food and that’s completely normal, your Mum has the added infection on top right now which wont be helping.
With regards to a feeding tube, that would only be considered if the decrease in nutrition is becoming a real problem and if it did ever become a possibility they would discuss this with your Mam so she can make an informed decision, feeding tubes are not that common in these situations as things generally improve on their own. Unless of course she became really unwell for example needing an intensive care setting.
Has the hospital team referred her to the dietician? They would come and see her on the ward and make recommendations of things that could boost her nutritional intake. Perhaps worth checking in with them about this?
For now I think the important thing is encouraging little and often if you can, regular sips of the fortisip rather than trying to drink a whole one. The team will be keeping a really close eye but hopefully as the infection lifts and Mum starts to recover her appetite will return. Slow and steady for now.
It sounds like you are doing an amazing job looking after Mum and trying your hardest to respect her wishes, she is a very lucky having you by her side though this.
Take care of you too,
best wishes,
Heidi J (Support Services Nurse)
Hi @Lillegs I am so glad that you have found our forum family.
It sounds as if you are an amazing caring daughter and that your mam can talk really honestly to you, which must be such a gift for her, but perhaps difficult for you to hear sometimes. @Heidi-J-BloodCancerUK has given you a great response.
I wonder if you and your mam would benefit from having an honest talk to her nurse or her medical team about her concerns and wishes.
You mam might not fancy doing anything, and that is fine, but perhaps you might read or update her on news and have a good old natter or give your opinions (or in my case moan) about current affairs. You might do a crossword with her. Read something together
Just something to take her mind off things.
Please @Lillegs look after yourself as well as you are looking after your mam. This forum is also for you to say how it really is for you.
Please do keep posting we will be about over the holiday period
Hi there
I have a different blood cancer
As soon as I started my treatment I was being sick
I suffer with car sickness and I had hyperemisis in pregnancy and I’m terrified of being sick to the point I stop eating and drinking.
Treatment also changes how food tastes and smells of food can be nauseating .
Fortisips are not that palatable when warm
Does your mum have anti sickness ?
Experience has taught me to start taking anti sickness even if I’m not being sick
I was rehydrated with fluids and encouraged to eat little bits even if I was sick
The only time a feeding tube was suggested and I refused was through my stem cell transplant
Through chemo cycles the week off I managed to eat what a fancied be it chocolate and cake
I had lost 2 stone
I’ve always been the patient but I know it was tough on my husband and daughters to support me during my treatments. There is loads of helpful information here.
The most important thing I would say but it always sounds corny is look after yourself because you can’t be there for your Mam if you don’t look after yourself.